#spoonienet

[thespoonienet]

i need some advice and idk where to go! basically i found of a spoonie on instagram (an internet friend) is really homophobic and it’s really hurt me😭 it really upsets me that everyone thinks she’s sweet and nice when she’s not. i just wish i new how to change her mind or i wish everyone knew, but i don’t want her to get hate... idk???

Oh gosh, I’m so sorry love. That’s awful. I hope you know that you are ALWAYS supported here! We love all of our spoonies of any sexuality. Have you tried talking to her about it? I know it can be hard to change opinions, but sometimes education is really what is needed to open people’s eyes. 

I’m here for you!

[phdincrohns]

There's probably nothing more annoying than getting a prescription for new treatment via injections only to have insurance approve the medication and deny the fucking syringes. I honestly can't wait to hear the bullshit reasoning behind this one.

[fox-and-roses]

Hi dears

I am so very very sick right now. Like, pain is bad bad bad. But I’ve been thinking a lot about what it means to build community. This has come up in my living situation, where some folx are not on the same page about racism and white supremacy, and how to build our community to be safe and prioritize POC.

So for y’all, for my community on tumblr, what does it mean to build a loving, safe space for spoonies, cripplepunks, disabled folx, building a support and resource sharing network, where we talk to each other, build each other up, and express the realities of being disabled, share our joy and bitterness, all of that! As well as recognizing and embracing and uplifting all the intersections that live in our community.

What do you think? What do you want? What would feel good? I really wanna know. I really wanna work on this and do everything I can to support. Hit me the fuck up :D

[wickedguise]

Anyways so today scientists at Stanford discovered biological evidence that Chronic Fatigue Syndrome (CFS) is a real disease so all of you ableist motherfuckers who have been saying that this shit is "all in our heads" can kindly fuck off now k thanks xox

[booksandteaandme]

#2

Swollen glands and a sore throat... It's flare time!

[daniellebmcmanus-blog]

Spoonies

Does anyone else get a burning pain at the socket where your leg meet your pelvis? I get it from sitting and lying down, which is great since that's all I'm physically able to do.

[nnicaela]

When you use spoons to relax and then something stressful happens Now all your spoons are gone and you're stuck being stressed out

[squirrels-in-space]

Gabapentin?

I just got put on gabapentin for fibro and migraines. Spoonies who've taken it, what's been your experience?

[greet-a-new-friend]

Dear Doctor, I am writing this in complete agony, bedbound once again as I am at least once or twice per WEEK now. I have been waiting for tests for 6months. So forgive me for not giving a shit that you wanted extra holiday time. So forgive me for not giving a shit that you apparently deserved the holiday I was deprived of because of illness and pain that you should've been helping. You're allowed weeks of holiday per year. I never get a holiday from illness. I know this might seem rude or insensitive or self-absorbed but it isn't on me when I'm frustrated because you aren't doing your job. From an annoyed, emotional teenager who has to do exams when he can barely lift his arms.

[dndgeekgirl]

For spoonie strong selfie Saturday. This winter has been rough. This makes two curbs with two cars now

[countyourluckyspoons]

My legs hurt so bad I can't sleep yet again. I hate that all of my bones are 1.5 centimetres out of place but most of my doctors don't take the serious crippling pain I get seriously. Apparently the fact that my legs spasm when I relax them at night and hurt so much to walk on and my entire body throbs and aches and hurts so badly isn't enough to warrant stronger pain killers than fucking cocodamol. I don't want this pain anymore, take it the fuck away.

[thespoonienet]

I'm a Spoonie going through a break up, and all the stress and anxiety about it is making my health conditions flare up. My ex-partner wants to not talk and have space, whereas I want close and to end things on a nice note. Wanting the opposite things makes it so hard and he has always only done things his way! Do you have any tips for managing health problems during stress, or for dealing with a breakup? Sorry for the long post, and thank you for your blog 💛

I’ve never had a breakup before, can anyone help our friend out?

[phdincrohns]

hey what’s it like to not be constantly exhausted? anyone remember??

[fox-and-roses]

Cw: pain, religion 🌻 🌻 This feels really silly, but the synagogue I went to today, not the one I normally go to, had very uncomfortable pews and my spine and back is completely out of whack and very painful right now. I have half of a pain med left, but I want to save it because I'm going camping this week and I don't know what will happen. I have more meds coming next week but I don't know how to deal with this pain now and go to the things I want to go to. I also was theonly person of color in the entire synagogue for the entire time. It was so weird and uncomfortable for me to be the only one, and I got a couple weird looks but also might be because I didn't stand because of my disabilities. How do you all deal with pain when you're not using pain meds? Is there anything that gives similar help?

[booksandteaandme]

#3

I had a long post planned about feeling guilty and blaming myself for my illness. But I'm low on spoons so I might save it for another day, if I don't completely forget about it. Today I wanted to buy boiled sweets for my sore throat (thank you, ME flare) but there were none in tesco or in the corner shop. Yeah I could have had soothers, but soothers are medicated and with my ME and weird sensitivities I have to be careful about what I consume. I was worried that, rather than ease my sore throat, I might risk worsening one or more of my symptoms. It would probably have been fine but ehh. My mum brought me some later though. Also, I'm still resisting bracing my knees or using my cane. I am probably going to regret this.

[squirrels-in-space]

I hadn't had a "good" day (read: a day where I felt like I used to feel on a typical day before fibro) in a long, long time. I got one out of the blue (they're always out of the blue) a few days ago, and it was shocking to me to realize that this is what other people feel like *most of the time.* I had the will and energy to go out for a walk. I had the will and energy to go pick up food. Simple things like writing a sentence didn't mentally exhaust me. I could go out and do something and then come back and not be utterly depleted and sapped of all ability. It reminds me of how profoundly different my existence now is from what it was, from what other people live most days. And it only further cements in my mind the fact that fibromyalgia is a debilitating, relentless illness that takes *everything* from you, and yet a fair amount of people don't even know what it is, while other people (including doctors) don't think it's real, and the rest just take you for a lazy asshole. I can't articulate how infuriating, how stupid, how pointless fighting this illness is. Your life is *ripped apart* utterly, you have virtually nothing left to you, and most people either don't believe you or don't care. It's absolute hell.